The autism advocate

With two daughters having Asperger’s syndrome and a son with autism, Filipino expat Mj Maria assumes the role of an autism advocate with due diligence.

Asperger’s falls within the autism spectrum. Strong verbal language skills and intellectual ability distinguish Asperger’s from other forms of autism. But it generally involves difficulty with social interactions.

A mother of four, Maria has been living in Abu Dhabi for the past 12 years. Her eldest daughter, Sabrina, a 19-year-old pre-law student is intellectually and artistically aware.

Her second daughter Sarah was a bit shy growing up but went through all the right milestones and enjoyed mainstream school. ‘When she entered fifth grade, she suddenly exhibited difficulties in the classroom setting and socialisation situations. At first we attributed it to regular growing pains. Then we noticed that her writing and reading skills suffered, letters and numbers were written backwards. She became so afraid of lessons and being embarrassed that she actually started to stutter. Her confidence started slipping,’ says Maria.

Although Maria was initially devastated, ‘we decided to fight it and not just give up. Her father, Junal Abdullah, a securities compliance officer, was in the forefront. We made arrangements to support her in school, spoke with other parents for help with their kids, and also academic tutorials after school. We made her understand that while grades and scores are fantastic, it did not measure her worth. It wasn’t easy for her or for us. I was elected as a PTA officer because I was so visibly active in school and voicing for parents with similar fears and concerns.’

Apart from caring for her special needs children, Maria is also an advisor for the Overseas Filipino Workers Global Movement for Empowerment

Antonin Kelian Kallouche

Sarah was still falling behind in lessons, had a problem with concentrating and developed anxiety. ‘She then felt bullied and left out by faster and more “worldly aware” batchmates. But when we broke down lessons in the house, gave her time to take it in without pressure, she began to understand even advanced concepts. That’s when we realised she somehow had a different method of learning. She was more visually creative. She had to see to fully understand concepts in relation to reality, rather than just vague and general writings on the board.’

Their son Saud, who suffered a traumatic birthing, was the most obvious case as he regressed in verbal communications and direct interaction by the time he turned four. ‘His conventional verbal communications never caught up,’ says Maria.

With their third daughter, nine-year-old Shahana, it was more or less expected since she went through a noticeable period of verbal withdrawal. ‘It wasn’t as traumatic like Sarah, she caught up quickly with communication skills. General academic delay is still there,’ says Maria.

‘With each diagnosis, we felt crushed and afraid. Seeing the diagnoses in paper, made it feel very real; we were worried for each of our children and their future.’

Soon Maria realised that the girls were creative visual learners and Saud was a spatial visual learner. This means the girls learn quickly through video demonstrations, even complicated concepts and instructions. Sarah learned to knit and make videos and graphics via youtube. Shahana is quick to grasp conversations and emotions. Saud has a love and quick ability to arrange and see patterns, like forming puzzles.

‘It is difficult and painful as a parent to see your beautiful children regress or stay within a particular level of skill sets or development stage while peers have gone onwards by leaps and bounds. You can’t help it. Especially since autism and Asperger’s are “invisible disabilities” as they say. You cry a lot. At first, You feel anger and frustration. You feel as if you failed somehow.’

But there are big heart moments that make life worth living. ‘When they express love and complete trust to you. Special needs children have a special love connection, an empathy and expression of feelings going beyond verbal or written words. It brings hope.

‘We finally opted for homeschool or “unschooling”, because we were able to understand their needs and teach the kids better within the physical safety and emotional stability offered at home.’

Maria admits that the initial homeschooling days were tough especially without facility support or academic structure. ‘Then there was the judgment from, ironically, those who do not know anything about the concepts and flexibility of homeschooling. Plus the cultural and social pressures to meet “traditional” educational achievements and expectations,’ she says.

‘I wanted to focus on basics; mental health, physical safety awareness, life skills, practical concepts, kindness and manners, real-life values and general knowledge. It’s a daily fluid experience wherein we all learn something. It’s a mix of structure and spontaneity. We know that not everyone would agree with it but our children are learning, thriving and know they are loved. They don’t know “everything” but they aren’t ignorant or “uneducated”.’

Thanks to these persistent efforts, the children are all very affectionate and openly loving. What’s more, the girls are aware of their ‘special qualities’ and understand that it is not a barrier or shameful. ‘We no longer compare or base progress on charts by “experts”. We know our children and we are fighting for their best interests. As a family and individuals, we thrive and grow with the happiness and strength that life builds within them.’

But their life is not without challenges, most of them rising from the stigma around homeschooling in their home country and. of course, lack of understanding about autism. ‘Homeschooling was viewed with suspicion that the kids were slow or backwards, lonely losers or even as child abuse and deprivation.’ says Maria. But over the years, she has become very vocal and open about her disappointment about the way her community views special needs. ‘Some families refuse to accept when one of their own exhibits the signs. This is automatically and cruelly labelled as an abnormality, a mental illness, something to be hidden, a curse on the family etc.’

However, the family is very grateful for the community spirit of safety and acceptance in the UAE. ‘It is one of the main reasons we are still here. Not just awareness but actual inclusion of individuals with special needs. You can feel that there is a more open-minded readiness to help. There is warmth and true concern. Maybe it could be raised one step more in the giving and inclusion part, not as charity but on the humanity aspect.

‘Special needs families are productive and pull our own weight and have lots to contribute to society, but we are also drowning in different ways; financial and emotional being at the forefront. We just need a truly inclusive helping hand to bolster us. A plea for more concrete practical help as everything is at cost — facilities, therapies, more support and inclusion to all families and individuals contributing to this community and society, hopefully regardless of nationality.’ says Maria.

Maria is an admin of Abu Dhabi Q&A, a Facebook group with over 35,000 members, and is an advisor for the Overseas Filipino Workers Global Movement for Empowerment.

Back from the brink

It is every mother’s worst nightmare to see her child fall into the abyss of depression; US expat Amy Hix has endured this ordeal several times.

Growing up in Wisconsin, US, her son Ernesto was a happy boy with plenty of friends. ‘His second grade teacher told me she wished she could capture his enthusiasm and love for life in a bottle,’ recollects Amy.

Ernie’s life hit a speed bump when he lost a best friend in 2011 and another close friend the following year. ‘Ernie never understood why people he loved were going away from his life and that marked the beginning of his battle with depression,’ recalls Amy.

At the age of 14, he had his first bout of depression. ‘It was not severe but was definitely a cry for help,’ says Amy. ‘Then I found a few things written in his notebook, which strongly suggested mental depression.’ He was provided professional treatment.

Amy’s son had a serious bout with depression growing up. As part of her mission to raise awareness, Amy has started a support group in Abu Dhabi for parents who have undergone similar situations

Antonin Kelian Kallouche

A few months later, assuming that Ernie did not need constant supervision, Amy left him at home just for 40 minutes to go to the supermarket. ‘He had no red flags to signal he was in danger. I came home and find Ernie sitting in a corner of the bathroom, absolutely distant and speechless,’ says Amy. Following this, Ernie became emotionless and depressed, and required professional care.

Finally in 2013, he met a counsellor named Randy whom he opened up to.

‘Being a single parent at that time and having two daughters, I did not realise Ernie was yearning for maIe company. Randy changed things for Ernie. They would go play basketball, talk and basically do “guy things”,’ says Amy.

Meanwhile, Amy sought help for herself by joining a family support group run by the National Alliance for Mental Illness (Nami). From there she realised that the way she handled many things just created a more toxic environment in her approach with Ernie. ‘I could have been his advocate in a more positive way,’ says Amy, who went on to become one of the facilitators of Nami. In May 2017, she left the US to work in Abu Dhabi.

Now 21, Ernie is a changed man with a positive disposition thanks to rehabilitation and counselling. He is currently in the US under an Individualised Education Plan where he can continue to attain his high school diploma.

Amy advises parents to look for signals that can trigger depression. It could be a time of year or event that brings back certain memories. ‘Looking at Ernie’s history, most of his severely depressed stages were in October. Now, we have gone through four Octobers without any problems and that is an extremely good sign,’ she says.

As part of her mission to raise awareness, Amy has started a support group in Abu Dhabi for parents who have undergone similar situations. ‘Support groups help by providing a safe environment as they include people who are not so emotionally tied to the situation. Their thoughts or suggestions are experience based. Nami made me realise that many family members are suffering silently. I would like to see something like this happen here in the UAE. Also, having a social/emotional curriculum within the school would help children have empathy towards one another and work together as a team,’ she says.

Amy’s support group can be contacted via email: ymamy2003@gmail.com.

The firefighter mum

Lebanese expat Youmna Ghaziri got the shock of her life when her eldest daughter Lynn was diagnosed with Erythromelalgia (EM) at the age of eight. Commonly known as the ‘Man on Fire’ syndrome, the condition causes Lynn’s skin to swell and turn hot, and her fingers and toes to become numb and her hands and feet to burn with pain.

Until then, Lynn was a happy little girl attending regular school in Dubai. ‘Shortly after her eighth birthday, Lynn started complaining of pain in the soles of her feet. She attended classical ballet classes twice a week, so I thought it was due to dancing. But the reddening went on for hours; cooling down for a short time, only to burn again. I would put the air-conditioner at the coldest temperature until it felt like we were living in an igloo. Lynn would dip her feet and hands in cold water but the water would get warm from her burning skin,’ remembers Youmna, who has been living in Dubai for the past four years.

The flares began to increase, triggered by simple movement and temperature change. Lynn kept missing school because of the unbearable pain.

Youmna and husband Ziad are spearheading #RedHandChallenge to create awareness about Erythromelalgia, commonly known as the ‘Man on Fire’ syndrome, which afflicts their eldest daughter

Supplied

‘We searched for months for a doctor who would diagnose her properly. We travelled with her to meet doctors around the world. Finally a doctor in Boston identified that she had EM. The bigger shocker was when we found out it was incurable, but can only be managed to ease the pain,’ says Youmna.

EM is a condition that affects one in a 100,000 people and unfortunately, there are no other registered similar cases in the Middle East or Arab world. Youmna had no choice but to pull Lynn out of school and start homeschooling her.

One day, she and Lynn were brainstorming on how to bring awareness about such a rare disease. ‘Lynn herself came up with the idea of painting our hands red and challenging others to do it. The red paint symbolises the red colour of her skin while she’s flaring.’

Thus the concept of the Red Hand Challenge (RHC) was born. Participants have to dip their hands in red paint (or ketchup), make an imprint on a white paper plate (or any white background) and post it on social media while tagging three other friends along with the hashtag #RedHandChallenge.

‘We encourage people to be creative about it with videos. They can also talk about their own experiences with other rare diseases and help in spreading much needed awareness’, says Youmna. Already, there are over 400 posts on Facebook and Instagram, with support pouring in from friends, family and complete strangers from all corners of the world.

Her other daughter, 20-month-old Lara, hasn’t been tested for EM since neither parents nor her sister have the gene mutation responsible for primary EM.

‘Lynn’s case is idiopathic, meaning that doctors don’t know what caused it. Knowing that we don’t have the gene mutation was reassuring for me but it is Lynn who worries about her sister and says she doesn’t wish that kind of pain to anyone,’ says Youmna.

Youmna’s husband, Ziad Ghaziri, is the cornerstone of the RHC campaign. Besides spreading the word, he takes care of most of the logistics whenever they are hosting an awareness campaign. ‘He even babysits Lara when Lynn and I are out at awareness events.’

Youmna also started a blog called the Fire Fighter mom where she pens down her experiences to share with the world.

For more information, visit thefirefightermom.wordpress.com and facebook.com/RedHandChallenge.